So…lengthy backstory. Hayden was born with bilateral cataracts. Who knew that was even a thing?!? Apparently, it is, and it happened to us (just writing this is bringing back all kinds of anxiety, so this may not be too lengthy after all). The day after he was born, the pediatrician came in and checked Hayden’s eyes for something called Red Reflex (it’s what gives you red eye in pictures). He didn’t see it, but told us he would try it again the next day. Round two gave us the same results. We followed up with his regular pediatrician when he was five days old and she couldn’t find it either. We were told “not to Google this” but that she was making an appointment with an ophthalmologist. We spent all weekend crying and completely panicking and (duh) Googling it.
She was right.
We shouldn’t have done that.
Results brought up all kinds of things from “just a weird fluke that happens sometimes” to “tumors and brain cancer”. After an appointment with the eye doctor and a follow up with a pediatric ophthalmologist who was about six hours away, the diagnosis was bilateral cataracts and surgery dates were set for the next month. Neither eye doctor saw anything abnormal at the back of the eye, which was Very good news, but removing the cataracts was crucial for Hayden’s future eyesight. If they weren’t removed by the time he was six weeks old, the brain would decide that the pathways to the eyes were dead and would just shut down. We were also told that he would need to see a geneticist and have a ton of tests done to see if we could find out what caused the cataracts. I was disappointed, devastated and terrified. Who thinks that this is something you need to worry about when you have a baby? I knew parenthood would be full of sleepless nights and lots of crying and stress, but not like this. On the other hand, I also knew that there were lots of parents out there who would do anything to get the diagnosis we had gotten, which added a heavy helping of guilt to my plate.
Fast forward a couple months. Hayden’s surgeries went fine and I ended up being a Contact-Removing Ninja (still am and I’ve added Contact-Finding Ninja and Contact-Placing Ninja to my resume). We got into a good rhythm of eye drops, patching, and normal infant parenting. We thought we were in the clear. Poor kiddo was blind as a bat and had the uncanny ability to look in two directions at once (he still can), but he was healthy and his vision would improve with time. We were managing, but I was mentally overwhelmed and exhausted (postpartum depression was also kicking my ass, but I didn’t know that yet). I was making it day to day and that’s all I could do.
At his 5 month check up, his doctor was concerned that he wasn’t holding his head up yet, so she referred us to a physical therapist. Hayden had hypotonia (low muscle tone) and needed weekly appointments at the office, as well as weekly visits in our home. We figured that after a couple of months, he would be caught up and we could move on. We had no idea how weak he truly was and how long of a road we had ahead of us.
Around this time, we also saw a geneticist, who in my opinion, did way more harm than good. She was awful, and insensitive, and patronizing and just a general all around horrible woman. Side note: Why is it that doctors who have the scariest news to give, are the worst at giving it? Shouldn’t there be some additional sensitivity training or Bedside Manner 101 or something? She threw out all kinds of horrible genetic disorders that he could have and possibly die from. After lots of bloodwork and MRIs, all the results were either totally normal, or not abnormal enough to say anything. We talked a lot to family, and friends, as well as Hayden’s regular team and decided to hold off on any additional genetic testing until we saw some evidence that it was needed. Other than not having very good vision and being pretty weak, he was totally healthy and none of the extensive testing had told us anything. We just couldn’t take it anymore. I spent a lot of nights at home sobbing and scared to death on what was wrong with my little boy. It was so hard to stay focused on the positive things and pull myself out of the puddle I was in. Chris and I traded off on panic attacks, but I was in bad shape. The tiniest thing would send me into a tailspin and it was getting harder and harder to come out of it. We were missing our kiddo’s first year of life because we were just trying to hold it together until the next doctor appointment. He was only making the tiniest of steps in therapy and the road to him being a normal kid seemed longer and longer every day. It wasn’t until we decided to let it go that we felt like we were starting to breath easier and enjoy being parents. He wasn’t caught up developmentally by any means, but it didn’t seem impossible to get there anymore.
At a year old, Hayden finally pushed himself up on his arms.
After his second birthday, Hayden started crawling. This was major for both him and us. He was finally mobile and was able to build some strength and skill on his own without being tortured by us. It also became easier for us to see him as a toddler and not so much a baby. We felt like we could start expecting more from him and treating him like he was completely capable to do what we asked. I think it has helped Hayden a lot to be pushed to grow up a little bit (I didn’t need to get a toy that was farther away than he would like. He was now capable of getting it if he wanted to…how mean am I?). Once he could handle it, we got a stander and eventually a walker to bring home so he could walk around the house. He picked up on the walker pretty quickly and started spending a lot of the day in it.
About a month ago (his third birthday) HE. STARTED. WALKING. He can pull himself up to stand and then takes off. This will probably be the last week we have the walker, and my toes could not be more ready. It’s getting steadier every day and he thinks he’s the hottest thing around (I agree). Every milestone with Hayden has been in slow motion, but we have gotten there. The three of us feel like this tight knit, indestructible team. I don’t know if all parents feel this way, but we certainly do. We have tackled some major stuff and it feels like we can handle whatever’s coming our way (if the universe could avoid testing me on this, that would be great). The latest big step: PRESCHOOL!!!!! Maybe I’m the worst mom ever, but I couldn’t wait for the first day of school. It feels like we are finally close to the same page as other parents with kids Hayden’s age. When we first started discussing it, I was very concerned that the teachers weren’t going to realize how much help and looking after that he still needs. He’s not like other three year olds. Besides all the major differences like barely walking and almost no talking, he still has mannerisms and traits that are very baby-like. Some days he doesn’t put a single thing in his mouth, and other days I can’t leave anything remotely small laying out because he’s going to find them and try to eat them. He can’t put food on a utensil yet without help and we can’t leave him unsupervised with any more food than he can safely eat at once, because he will jam everything in arms reach into his mouth (maybe this is a typical three year old thing, but all the three year olds I know seem pretty self-sufficient at this point in the game). Would his teacher know that? Would she just assume he was past that stage and not even think about it? Once we met with her, all those fears went away. He is in a program for kids with special needs and all the other kids in his class are developmentally delayed. I didn’t know there were any others! We are finally going to have a parent group that understands the challenges and frustrations. And it’s a big milestone that we are able to enjoy just like everybody else.
In a way, I feel like parents of special needs kids can appreciate the little things in ways that other parents don’t. Every mom is ecstatic when her baby rolls over, but when you’ve had therapy twice a week for months, it feels like more of a team accomplishment. Because it’s not just “wow they rolled over!” It’s one week of “wow he’s holding his head up!” And then a couple of weeks later, they have pushed up onto their elbows and made it almost the whole way over. And finally, after a month, they have made a complete rotation! All of Hayden’s progress has been that way. Three of his major mobility benchmarks have each taken place a year apart from each other (pushing up, crawling, and walking). Anytime I talk to a friend who has older kids, I’m told to not rush it and as soon as he takes off, we are going to wish he hadn’t. Not us. We can’t wait, because we have been in limbo for what feels like forever. Essentially, we had a baby for two and a half years and we are finally reaching the top of the mountain that we have been tip-toeing up since he was six months old. We have laughed and cheered over every inch of progress he has made, and we are ready to be at the end of this particular road. I’m ready for Hayden to not have to struggle so hard for the things that come without thinking for other kids. It was a lot of hard work for all of us, but we made it. Together.